What do Ehlers Danlos syndrome, chronic myofascial pain syndrome, and mast cell activation disorder all have in common? Besides being a compendium of chronically painful conditions, their other most common denominator is Erica Siegel, a blogger we love. She is the author of the blog Slightly Distressed Damsel, and her “ultimate goal is to advocate for chronic pain sufferers and spread awareness.”
Diagnosed at age 23 with not only the three conditions above but also a rare tissue disorder, Erica was forced to leave a dream job in New York to live with her parents. What followed was a dark rabbit hole of doctors, specialists, chiropractors, and physical therapists, along with more than 40 drug therapies in an attempt to control her debilitating chronic pain.
So what did Erica do?
She searched long and hard online for information and became frustrated when she could find very little or just bits and pieces of accurate, helpful information. She decided that it was time to put her story, as painful and personal as it is, online for people to have information.
In her own words:
“Aside from a few really depressing tagged someecards.com and foam rollers on Instagram, the internet was not giving me anything. This astounded me. I thought, ‘Someone’s gotta be dealing with this somewhere and overcoming it.’ I wanted something positive, someone I knew that was dealing with it somewhere and knew all the answers.”
Because there was nothing like this at the time, the Slightly Distressed Damsel did the only thing she could think of: she started to blog. She started to tell her story, tragedies and triumphs, in the hopes that it would help someone just like her who was searching for answers or understanding. Her mission is to help others who suffer from any kind of chronic pain condition.
Again, in Erica’s words:
“If even one person comes across this trolling the internet in pain looking for anything, I hope this blog will give them some comfort and peace of mind…I want to share my story and inform the internet of what no one tells you when you’re dealing with chronic pain as a 20-something. Although my main intention is not to benefit the non-chronic painers…I hope it is as equally informative for anyone who stumbles upon it. For caregivers, friends and just plain old people who want to understand more from a firsthand “sufferer,”…I can only hope this will bring along an understanding and awareness that wouldn’t be found otherwise.”
One of the Slightly Distressed Damsel’s most popular posts is also one of her most practical ones: what she does for certain types of pain. She covers options for treatments for:
- Muscles spasms/trigger points
- Joint pain
Her collection of motivational chronic pain quotes (warning: some cursing is bound to happen!) had us laughing and thinking about what it means to persist and persevere through challenges in our own lives. The feedback and praise she has received from her readers prompted a similar response:
“…Erica…You are so brave for sharing your experience with chronic pain and I am so amazed by your persistence and determination to find the right doctor(s) and treatments. I know through my own experience with ‘invisible illnesses’ sometimes it’s hard to keep trying when you’re so tired/depressed/anxious/confused and for you also in so much physical pain, PLUS everyone just thinks you’re crazy and making it all up because they can’t ‘see’ your illness. Your strength is truly an inspiration…”
“I have just read your blog…and I am so touched by your story. My Nan has had chronic pain for many years and subsequently developed a pain killer addiction, so each day is such a struggle for her to control the pain and keep the addiction at bay. I have such respect for anyone that struggles in this way and am so pleased that there is light at the end of the tunnel for you. I can’t imagine how hard the last year has been. Thank you so much for sharing your story. “
From blogs about what to take on a trip the ER to how to look stylish even when you are in excruciating pain, the Slightly Distressed Damsel is taking her considerable challenges and using her story to help others live through the pain. In her stylish posts, she asks:
- Did you know an infinity scarf can double as a neck brace?
- That elastic pants can actually be chic?
- And oversize sweaters and fashion sneakers are now stylish items and still comfortable for those in chronic pain?
Erica mixes humor with serious information. It is hard to imagine being in your mid-20s and not being able to function in daily life without substantial help. The Slightly Distressed Damsel somehow manages to find the humor in this situation. She recognizes that the road to becoming pain-free is a long one for most of those dealing with a chronic pain condition. Erica believes that she is making this road a little smoother by sharing her own story. Erica relies on quotes to stay positive, and she closes her personal story with a quote from Iyanla Vanzant:
“It’s important that we share our experiences with other people. Your story will heal you and your story will heal somebody else. When you tell your story, you free yourself and give other people the permission to acknowledge their own story.”
Visit the Slightly Distressed Damsel online, then share your own story below.
Image courtesy of Erica at Slightly Distressed Damsel